Saturday, June 15, 2019

And they’re off...

Family vacation started today!!  They all piled into the van and headed South. They will spend a week at the Lake House - boats, jet skis, fishing, and family. What could be better? Well, maybe if we all went...
Alex, Kai, and I stayed home.  Everytime I would think about Alex and the Lake House, I would get this overwhelming sense of dread. So reluctantly I brought it up with Jason and we agreed he and I should stay at home while the family went on vacation. And instantly I was lighter and happier. I knew it was the right decision. I wish we could all be together, but this is the best thing for our family right now.



We decided Kai would stay with me. He doesn’t do well with new and unexpected changes in routine.  The family leaving was hard on him. He had a meltdown, but settled down after a while. He and his Grandpa have a special relationship. Gary and Sandi kindly came over and spent some time loving on our boy.  He’s fine and got to talk to everyone on the phone a couple of times. It was sweet.


So Day One of vacation is in the books.  I spent the day cleaning up after the boys. The travelers traveled. (That’s a long drive!!)

Thursday, June 13, 2019

And the spiritual side of things..

Last night I read Mosiah 14:3, which is a quote of  Isaiah 53:3

He is adespised and rejected of men; a man of sorrows, and acquainted with grief; and we hid as it were our faces from him; he was despised, and we esteemed him not.

The phrases "we hid as it were our faces from him" and "and we esteemed him not"
kept floating around in my head.  I thought about my Savior and wondered if I was turning to Him as much as I could be, should be.  And decided I probably wasn't.  

The next morning (this morning) I read this from a group I follow on Facebook:

It was one of those days when my kids, my house, and I were all about to simultaneously explode.
It was noon, and I opened the freezer.
Reaching for the good ol’ chocolate ice cream.
Cause, hot dang, I deserved it.
And a thought came:
.
You reached out to ice cream before you reached out to me.
Maybe you deserve ice cream..
But you really deserve Jesus
.”
.
The thought didn’t fill me with guilt.
It brought relief.
And made me pause.
And as I ate my ice cream..which I also deserved.. I wondered, why is it so easy and natural to lean on other things instead of our Savior?
The power of the Savior’s atonement is not just the redemptive power of making a bad man good, but also His enabling power to make a good man better.
It is easy to think about the Savior’s atonement when we screw up.
But when we are in the thick of school or motherhood or tiredness or anxiety or life...sometimes it is easy to forget we have a source of everlasting strength waiting for us to use.
———
“Grace is not our booster engine that kicks in once our fuel supply is exhausted. Rather, it is our constant energy source. It is not the light at the end of the tunnel, but the light that moves us through the tunnel. Grace is not achieved somewhere down the road. It is received right here, right now. It is not the finishing touch, it is the finisher’s touch.” Brad Wilcox
———
Whatever you are suffering today, Christ has already suffered it.
Now he is waiting quietly by our side.
Hand outstretched.
Peace, waiting
Light, waiting
Strength, waiting
For us to reach out and grab.

Obviously, the Lord wasn't finished teaching me about that verse last night.  I am grateful that He loves me enough to send me so many messages that He is there and waiting for me to turn to Him through all of my trials.
So naturally, being a Mama, I had to share this beautiful truth with my babies!  So here is our scripture study tonight, doing our masks, eating our ice cream (Yes, I was setting them up for the feels), and then reading from the scriptures and from this devotional.  What a blessing to be a mother and be allowed to share the Gospel of Peace with my children!

The gift of being understood

I can't tell you how many diapers Alex took off today or how many showers he had or times we had to clean up the floor after him.  But there were some choice moments today - like at bedtime when his face was content.  

Today Alex resumed OT.  He only does private OT during the summer.  During the rest of the year, he receives OT through school.  I loved hearing the progress the OT noted he has made since last summer - waits better, transitions better, attends better.  Wahoo Alex!

It was so nice to talk with her.  With Alex, I stay during therapy instead of waiting in the waiting room.  Besides we needed to catch up on his medical history and the drugs he's taking.  But the part I love is in private therapy, it's about Alex - his whole life - not just the academic side of things.  So we talked about his appointments, his drugs, his upcoming tests.  We talked about the holes in my drywall, about the showers, about what the doctors have said to me. I verbalized some things I only think about.  I talked.  She listened - and understood.  No, she doesn't have her own Alex running around.  But this is what she has done for years and years.  She has walked this path with other mothers and other Alexs.  What a relief, what a blessing to talk to someone who doesn't bat an eye when you talk about poop and strange behaviors. Someone who offers suggestions that might help the family as a whole.

Alex loved therapy today.  He swang.  He threw balls of varying weights (he LOVES the impossibly heavy one). He got deep pressure squeezes from me.  He waited and transitioned.  And I came away with the same load, but a lighter heart.  I am so grateful we have therapy!!

Wednesday, June 12, 2019

Back to the Blog I go..

At one time I was a faithful blogger.  I think that was more to prove to myself that my family was good and we were fine, despite our challenges.
It seems it's time to start blogging again for the same reason.  Because my life seems hard right now, and I need to prove to myself that my family is good and we are fine, despite our challenges.

AUTISM. 
Not the kind that people talk about.  Not the kind where the child knows everything about a subject.  Not the kind where the child needs social stories to be able to handle new situations or changes in routine.  Not that autism.
No, I'm talking about the non-verbal, poop smearing, constantly stimming, has no idea there are other people in the room (expect occasionally to meet his needs), eats drywall, your doctor talks to you about residential living arrangements kind of autism.

In my mind, there are three autisms - high functioning, then what people think about when they hear autism, and the severe kind ... the kind Alex has.

We have the sticker on our car.  We go to the occasional autism activities - for the other SN kids in my family, but Alex is always left at home.  And he doesn't care.  He doesn't notice.  He couldn't care less.  It's not like he's dissing the group.  It just honestly doesn't even come near his world or enter his mind that there is more out there.  His world is spinning and swinging and banging and putting everything in his mouth.  His world is his cookies and his chew clothes.

And then there's EPILEPSY.

Which has been killing us over here lately.  The other day my 16 year old was bagging my son!  (translation: she was using an ambu bag to force air into his body while he laid on our kitchen counter.  His 20 year old sister was timing the seizure.  His 18 year old sister holding him on his side because he was salivating so much there was danger of his saliva going into his lungs.  Where was Mom?  On the phone with 911.)  My big kids can go from self absorbed, doing their thing to totally focused on a small seizing brother instantly.  They were trained in the school of life how to care for him.  My 12 year old asks if we are going to have to call the fireman whenever Alex gets sick.  (because the fireman are just around the corner and respond to our 911 calls very quickly.)

Alex used to have long scary seizures, but very infrequently.  Now he has multiple seizures a day.  They are short, but they leave him having to sleep them off for several hours.

Which brings us to our newest normal:
Periods of autism, followed by postictal Alex, followed by autism.

I am tired, so tired.

There is another side to Alex that if I'm being 100% honest, I have to record.
Alex is a funny and loving child.  He delights in his toys - anything that makes noise.  His laugh and smile can light up the room!  And after he's had a seizure, as well as other times (I think he needs the deep pressure input), Alex cuddles.  And it's the sweetest thing.  And he loves it when you repeat his sounds!  He has learned a song, "Are You Sleeping?" and he LOVES it when you repeat it after him.  Fortunately, it's a repeat kind of song:
Are you sleeping?          Are you sleeping?
Brother John?                 Brother John?
etc.
Only he doesn't use words, but he makes his noises and we know it's that song.
And he can be taught.  If I say, "Brother, pray time!"  He puts those little hands together so fast - and it's precious beyond words!

We love our Alex.  He is our precious, sweet boy.  But I am tired and a little scared of what the future holds for him.  I do not like these seizures - or all of the drugs we are pouring into his body to try and get them to stop.  Hang in there, buddy!  We are trying to figure this out!

Sunday, January 27, 2019

Sunday

I was able to go to Sacrament Meeting today.  What a blessing!  I left feeling renewed physically and spiritually.  How grateful I am for the commandment to meet together oft - cause sitting in a room with that many people is not something I would naturally seek.  But I was so blessed to be renewed today.

Thursday, January 24, 2019

This little light...

I have joined a new group on Facebook. It’s for local birders. They take these amazing photos of cardinals, house finches, bald eagles, local birds, and I love it! I love the color, the grace, the symmetry. There is so much beauty to admire.

Sitting here tonight, not wanting to go to sleep, fearing what the these dark hours will bring for Bella, I kept noticing this little light under her hospital bed illuminating the tube carrying the highly oxygenated and highly pressurized air to my baby girl. 

It’s not a female cardinal against a snowy background, but it’s a God send to my baby’s lungs as they attempt to recover from their lastest assault.  There is beauty everywhere if you look for it.





From my studies this week…

President J. Reuben Clark Jr. said: “I believe that our Heavenly Father wants to save every one of his children. . . . I believe that in his justice and mercy he will give us the maximum reward for our acts, give us all that he can give, and in the reverse, I believe that he will impose upon us the minimum penalty which it is possible for him to impose.”

(J. Reuben Clark Jr., in Conference Report, October 1953, 84.)


When I was a child I often had [a] toothache, and I knew that if I went to my mother she would give me something which would deaden the pain for that night and let me get to sleep. But I did not go to my mother—at least, not till the pain became very bad. . . . I did not doubt she would give me the aspirin; but I knew she would also do something else. I knew she would take me to the dentist next morning. I could not get what I wanted out of her without getting something more, which I did not want. I wanted immediate relief from pain: but I could not get it without [also going to the dentist].

Our Lord is like the dentist. . . . Dozens of people go to Him to be cured of some one particular sin which they are ashamed of . . . or which is obviously spoiling daily life. . . . Well, He will cure it all right: but He will not stop there. That may be all you asked; but if you once call Him in, He will give you the full treatment. . . . “Make no mistake,” He says, “if you let Me, I will make you perfect. The moment you put yourself in My hands, that is what you are in for. Nothing less, or other, than that. You have [free will], and if you choose, you can push Me away. But if you do not push Me away, understand that I am going to see this job through. . . . I will never rest, nor let you rest, until you are literally perfect—until my Father can say without reservation that He is well pleased with you, as He said He was well pleased with Me.”

And yet—this is the other and equally important side of it—this Helper who will, in the long run, be satisfied with nothing less than absolute perfection, will also be delighted with the first feeble, stumbling effort you make tomorrow to do the simplest duty. As a great Christian writer (George MacDonald) pointed out . . . “God is easy to please, but hard to satisfy.” . . . On the one hand, God’s demand for perfection need not discourage you in the least in your present attempts to be good, or even in your present failures. Each time you fall He will pick you up again. And He knows perfectly well that your own efforts are never going to bring you anywhere near perfection. On the other hand, you must realize from the outset that the goal toward which He is beginning to guide you is absolute perfection; and no power in the whole universe, except you yourself, can prevent Him from taking you to that goal.

(C.S. Lewis)

Saturday, November 24, 2018

Another Week

So this week was White Cane Day.  The boys came home with these cute canes they made from white pencils.

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Another appt for Bella – this time Rheuhomology (however you spell that) – more selfies for the wait

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The doctor ordered all kinds of blood tests.  She was so happy to wait before hand, but then the blood draw was terrible!! They try so hard, but four adults working on one little girl – it just makes my heart sad.  I promised her pizza for dinner, so off we went to Domino’s where they made it all right in front of her.  They were so sweet!

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Fall has been so beautiful this year!  It literally causes me physical pain.  Jason thinks that is so weird, but I just see it and it’s so beautiful and I know it’s all just going to be gone soon.  So I take lots of pictures, but it never captures what I see.  Life lessons?  Just live it and love it, I guess!

Grandma and Grandpa Turpin are back from their trip to New York.  We sure missed them!  Especially Kai!  He just LOVES his Grandpa – Yaya!

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Sammi’s beautiful banana pudding and some yummy cookies

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Playing around

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Cute Benny at therapy

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Bella and Joy’s teacher is an artist – in addition to being a fabulous special ed teacher.  They are always painting and creating – I love it!!

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Pizza Night!

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Kai and Ellie both love chips!

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Not pictured in this week:

My visit to Joy’s middle school for next year.  I called and asked for a tour.  It seems like such a wonderful school.  They cook something every week.  They go out into the community every week.  They go out to eat in the community every month.  In addition to working on their goals and academics.  I got to meet most of the teachers (there are four) and see the classrooms.  Ugh, double ugh, super ugh.  I LOVE the girls’ teacher so much.  But he tells me Joy cannot stay in his class for the next six years until she graduates.  (CRY!!)  He tells me she is ready for junior high, but I”M NOT!!!

The very next day was the girls IEP meetings.  Went well.  Two IEPs done in an hour and a half.  This team knows these girls as well as I do.  I love that they are with this team.  I am so grateful for their opportunities.  I just couldn’t ask for more!

And another session at the temple.  Grateful that it’s part of my routine now!

Thursday, November 01, 2018

Another Week

Fall foliage – breath taking!

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Sweet Benny in the sink – all of my babies have sat in the sink.

I love family dinner on Sundays so much!  Jason sure loves his Benny!

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Sammi just adores this boy so much!

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Outside play – loved watching Bella pushing Alex!

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Halloween!!!

Joy the Zombie! (of course) Bella was Queen Elsa.  Alex was a fire fighter.  Kai was Logger Vic from Booni Bears (a Chinese cartoon).  Sammi dressed up in her Early American costume.  We had our traditional fire pit and sat out on the driveway.  The kids had a great time!

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A sweet Activity Days girl planned a special activity just for Joy and Bella – it included all of their favorite things: pizza, fruit, dress up, and seeing themselves on screen.  So thoughtful and they had so much fun!

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Lizzy and I headed out to Versailles KY to the All State Orchestra auditions.  Such a beautiful drive through horse country!  I loved it so much Jason and I drove out to Versailles again on Sunday morning so he could see how beautiful it is!

Versailles is such a cute little town!  Lizzy auditioned and then we stopped at a Cafe on Main St for lunch.  Seriously felt like we were in an episode of The Good Witch from the Hallmark Channel.

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Sammi and I went to Christmas in the Woods at the Loomhouse.  Sammi loves looms and all things old fashioned!

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